A Riveting Parent Perspective

How do I begin to describe the wonder we named Kaleaha Marie Maldonado? We have been blessed to have her in our lives for 30 years. We were told average life expectancy of a Jacobsen Syndrome child was 2 years old. We were told this by a genetic counselor when she was 3 years old. That pretty much sums up the information from 1970 we had until Kaleaha was 5 years old.

Around this time, I learned of the human Genome Project: The main goals of the Human Genome Project were to provide a complete and accurate sequence of the 3 billion DNA base pairs that make up the human genome and to find all of the estimated 20,000 to 25,000 human genes.

How did this affect us? Thirty-five families from all over the USA agreed to meet at Southwestern University in Dallas Texas. It was going to be a costly trip, so we needed help. A wonderful radio show team called The Dog House the hosts JV (Jeff Vandergrift) and Elvis (Dan Lay) helped us out by doing a fundraiser. JV swan from Alcatraz Island to pier 39. JV did it! His team and listeners Raise enough money and got us to Dallas Texas.

We all met there, and that evolved into the 11Q R&R USA group. You can learn more about that by looking up 11qusa.org. That was the beginning of a parental community that help me navigate the rest of Kaleaha’s educational years. I learned about IEPs and different types of programs to request assistance for.

Kaleaha’s educational learning started with regional center programs like early intervention programs. She had to learn sign language at 1st since she couldn’t verbalize well until after age 3. She was having multiple ear infections, and it took until this age to get her treatment to remove fluid from behind her ears to allow her to hear our voices. Prior to this her hearing was as if she was underwater.

Kaleaha continued from 18 months all the way through 22 years old in the public education programs. After the age of 22 we had a few special day programs that we tried out for adults. This is where most of our difficulties began, we tried the various programs that would allow a 1:1 aid to assist Kaleaha. After trying the multitude of adult special day programs that were available in our area. I was pretty much ready to give up.

We switched Kaleaha to the Independent Living Skills program known as ILS. This worked out well for a little while a couple of years in fact. Then we ran into difficulty with staffing so now we started using different companies. We always ran into the same problem staffing. It was never consistent, and this seriously affected Kaleaha’s mental and cognitive abilities, severely triggering her negative autistic tendencies.

We were incorporating ABA Therapies at the same time as using the ILS services, so we were able to hunker down refocus and bring her out of the cycle. Then we started looking for new programming. With a referral we visited College of Adaptive Arts. We visited this campus. We were skeptical at first about its functionality with an individual who required a 1:1 aide.

Kaleaha’s ILS service provider thought it was worth a try she was very impressed with the progress she saw with her other clients. My fear held me back for a little bit, but I really wanted to get Kaleaha into a program that would provide her with more normalcy like she had throughout her previous educational years. I thought, “Well let’s give this a try.”

We selected some courses and arranged various caregivers. Kaleaha started her first day at College of Adaptive Arts. It took a little bit to find her groove but once she did, she took off like a rocket! She started participating in programs that got her back out into the community. Classes that rekindled her love with cheerleading. Reading and speech have become new interests for her. She participated and several events and her collegiate career has been on a fast track at lightning speeds ever since.

As a family, we do not believe Kaleaha would have accomplished the amount of success and overcome the many hurdles that she overcome had not been for the staff and programing at the College of Adaptive Arts. They have formatted a program that seeks out abilities and applies the knowledge to format a curriculum that allows individuals with different abilities to prosper and shine like the superstars they are.

Kaleaha is one of the lucky students to have found the wonderful staff and program that is The College of Adaptive Arts. Please come a visit the program there is nothing to lose, but everything for your student to gain.